Tag Archives: tripping

Playing The MS Game

Almost seven years after my diagnosis, and years of symptoms before that, I think I’m now fairly adept at playing the MS Game.

I know when it’s best to:

Wake up – 5am – brain at fullest function, emails, print things off, brainstorm Uni stuff. Coffee helps.

Shower – straight after work (I know, weird, huh?) but working as a builder, it’s best to wait until after work as I just can’t handle two showers in a day. I shove my hair under a woolly hat and hope for the best (and some customers call me ‘lad’, gah).

Cook – a moveable feast – whenever I have the energy. Freezer bags of pre-cooked food are my friend for bad days when I can do nothing more than microwave. On really bad days, well …

Work – has changed so much over the years. Thank goodness my job is flexible and can be adjusted to how I’m feeling, plus working with a group of friends is balm for the soul, compared to the bullying I put up with in my previous job.

Study – five minutes here, ten there. Anywhere and everywhere. Boss drooling in Screwfix? Whip book out, highlighter in hand. Boss talking for hours with the plumber/electrician/plasterer? Same. As friends, we go back a very long way and he knows I pull my weight (lol).

Do Housework – on an ‘As And When’ Basis. Cordless vacuum, ignore the dust. Keep hold of that leaflet for cleaning services for when I win the lottery.

LIve – the tricky one. I no longer travel alone. I rarely socialize. Once, twice a month – it’s a lot of effort. Home is my safe space. Meetings are planned for the morning and taxis are a godsend. It’s the afternoons and evenings that are the problem.

Handle Relapses – the worst of all worlds, especially living alone. All of the above is scaled back to The Sofa.

Hold a Pity-Party – definitely in the wee small hours. I’m plagued by MS insomnia at the moment and seem to feel every single symptom, amplified. My legs crawl with neuropathic pain, I twitch, my hands move too fast or too slow. It’s a waking nightmare.

I think when you have MS, you live with endless body-consciousness – we know exactly what we are capable of (or not) on a day-to-day basis. I still smile when someone says, ‘yeah, cool, next Thursday?

I have absolutely no idea how next Thursday is going to be …

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Concealing The Unavoidable

StumblingI was ‘Getting The Teenager Ready For School’ the other day.

No mean feat.

Blazer? Grunt. Tie? Grunt. Lunch money? S’not enough, my mates get, like a tenner. AND they’re allowed to buy donuts.

Anyway, in the middle of this, just as I was adjusting the straps on his empty school bag yet again, I tripped over a rug, one of many in my house.

The Teenager looked horrified. I righted myself and attempted a casual laugh. ‘Oh, d’uh, pesky rug, who put that there?’.

‘Why do you always do that? Why can’t you be normal, like other parents? I hate it.’

I tried to reassure him that I hadn’t yet had my requisite three cups of coffee and was simply tired. And yes, part of MS is stumbling and tripping.

‘Yeah, and your point is? You’re always tired. You always stumble’.

‘Am not’.

‘Are so’.

‘Am not’.

I realised that perhaps this line of reasoning wasn’t particularly mature, so I bustled around him and waved him off with a cheery, ‘have a great day at school!’, while he made shoo-ing gestures to urge me back indoors, lest any of his friends see me.

The Teenager has coped admirably since MS came into his life when he was 11 and in the middle of transitioning to high school. Not the best time for it, but MS could never be deemed a polite intruder. He’s witnessed too much, no matter how hard I try to conceal things from him. At his age, kids just want everything to be normal. They don’t want their parents to be different.

Some may ask what on earth I’m doing; why not let him see MS in all it’s glory? It’ll make him a better person. More compassionate, more caring. Fair point, but not for us. As a divorced single parent, I am his mainstay and he deserves a childhood.

I hide a lot from him, as do many other parents with issues, be it lack of money, anxiety, job insecurities, relationship stress. We want the best for our children and as such I drip-feed information to him as and when I think it is necessary. I don’t keep him in the dark, but I am selective.

He really doesn’t need to know all the ins and outs, especially my fears and worries. Why would he? Why put that extra burden on him, especially at his age when he is going through vital exams? My son is not my confidant, he is my child. And if the utmost aim of parents is to protect our children, then I will do that as long as I possibly can.

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MS Is Still Crap

evil laughI’ve spoken with a few people recently who have asked, ‘are you really so chilled about MS now?’

‘What’s happened to all the dark posts you used to write? And if you’re on something, can I have a bit?’

Hmm. Tricky. I sometimes feel that if I let the dark stuff back in, I will never leave the house. In a lot of ways my life is more fulfilling now than before. I’m far stronger (in mind, not body), I’m doing something I love with my Masters course and I am probably a kinder, more tolerant person.

However, there is definitely something in what they say. I admit, I still wake up in the wee small hours, gripped by a terrifying fear of the future. Every time I trip or stumble over my words, I am reminded that my life now will always be defined by these details. Heck, I even have plastic wineglasses.

I’ve had an angsty time at Uni, punctuated with inelegant falls and a very real dread at failing. My brain just doesn’t work the way it used to. Searching for the right word is charming in a French-language film, where the beautiful young woman pauses between cigarette puffs, but utterly soul-destroying when I struggle to find the word ‘paragraph’ at a tutorial at the age of 41 with wrinkles and an undying love of bacon butties.

So, yes, MS is still crap, in all it’s devious glory. It invades every area of my life. Currently, it’s shoving me around. Next week, perhaps the nerve pain will crank up, who knows? This afternoon I was supposed to finish my essay (deadline 5pm Wednesday). Instead, I fell asleep, in the middle of watching a very interesting discussion about which colours to wear this Winter.

My newest medical annoyance is trigger finger. Funnily enough, I noticed it in the wee small hours as I was lying in my bed pretending to be asleep in case the cat bounced on my face, yelling for an early breakfast. I flexed my hands and two fingers stayed the same, crooked and weird. I did the same thing and they stayed the same. Strange, and a little bit worrying.

So of course, I got up and googled MS and trigger finger after feeding the cat. There may be a link between the two. Or there may not be.

MS is crap and it always will be. The only thing that will change is my attitude towards it. And, the upside is, when I woke The Teenager and showed him my dodgy trigger fingers, he was actually rather impressed in a ‘ewwwwww’ kind of way. It doesn’t take much.

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Tripping All Over The Place

Did you know twice as many people die in trips and falls at home than in car crashes? No, me neither until I read the cheery news over breakfast yesterday. Now I have another thing to add to my list of worries that keep me awake in the wee small hours.

Foot drop is the bane of my life. I trip over flat surfaces, the cat, pavements, dust balls and just about anything else in my way.

At Christmas I tripped up the stairs, then fell backwards, smashing into my bookcase and landing like a squashed spider on the floor, books raining down on me. The bruising was spectacular, but I did find a book I’d given up as lost.

There’s no way of knowing when foot drop will strike. One day it leaves you in peace, the next it’s shoving you around the high street with abandon. People give me a wide berth, as hey, I could be drunk. At 9.30 am. Kerbs taunt me, potholes are a logistical nightmare when crossing the road and cobble-stones are pure evil.

Sorry Shakespeare, but I am never, ever going to Stratford-upon-Avon ever again. A lovely little day trip turned into a day from hell when I got out the car and saw cobble-stones stretched out in every direction. I clung to my friend for dear life and quite possibly looked as if I was being taken out from a secure unit for the weekend as I muttered, ‘evil, evil things, I hate you’ under my breath every few minutes as he dragged me up the road.

Then there was the Gastro Pub Incident, when a friend took me out for dinner. A short stumble to the bathroom led to disaster as I cartwheeled across the floor in front of six bemused diners, ending up halfway under their table. To compound my misery, my friend hadn’t even noticed as he was too busy scrolling through his phone. I limped back to our table, face burning, sniveling with pain and embarrassment.

Anyway, the good news is, the sixth most common way to die at home is by drowning in the bath. Thank you, MS heat intolerance for making baths a thing of the past. At least you’re good for something…

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